Stories

Advice and guidance from medical professionals and internet searches can only go so far, and the information and images are often scary. The best source of information, to know what it’s really like to have a child with a disability or life-long condition, is from another parent who has a similar child. We are honored and inspired by the parents who have shared their story with us. They inform and encourage others, in similar circumstances, just starting their journey.

We are actively collecting and updating new stories.

We welcome you to check back often, and to share your story. If you or someone you know has a story to share, please contact us to add your story.

Valorie: Cockayne syndrome

Valorie’s son Jace was a typical infant. Around 12 months, his head measurements were falling behind, and he was diagnosed with Microcephaly. He also had a severe sensativity to the sun. Hearing there was a correlation with the two, Valorie sent a skin biopsy to a specialist in England who was able to confirm that Jace had Cockayne syndrome. Valorie had to push doctors and insurance companies to get the procedures and care that Jace needed. Valorie learned to become a fierce advocate for Jace.

Nathan-sibling: MPS II Hunter syndrome

Nathan’s twin brother was born with MPS II Hunter syndrome. When Nathan was 3 years old he started to notice that his brother was different than other people. Nathan had to learn accept the public stares and questions he would get. His brother has inspired him to start a public online support group for siblings like him, called Siblings With A Mission.

Summer: Anencephaly

Summer found out that Ares had Anencephaly during an early ultrasound and learned that if he made it to term and was born would only live a few hours at best. Rather than aborting Ares, Summer wanted to meet and hold him and if possible have Ares be an organ donor so other babies could benefit from his life. Ares lived a handful of hours and passed away. Summer she sees the positive outcome on herself and her family.

Courtney: Harlequin Ichthyosis

Courtney had a typical, uneventful pregnancy. But, immediately after she gave birth to her daughter, Brenna, there was a shocked silence in the hospital room. Shortly after, Brenna was diagnosed with Harlequin Ichthyosis, which is the rarest most severe form of Ichthyosis. In the beginning, Courtney and her husband were fearful for Brenna’s future; but Brenna’s determination and confidence has shown her parents that nothing will hold her back. Brenna is now 5 years old, and her parents feel privileged and honored to be her parents.

Brittany and Tyler: Hydrocephalus, Encephalocele, and other complications.

Brittany and her husband Tyler struggled for years to get pregnant. When she got pregnant with their son Max, they were ecstatic. During a prenatal ultrasound, doctors found a multitude of abnormalities, including a club foot, heart abnormalities, missing brain matter, and Hydrocephalus. Doctors also found that Brittany had Amniotic Band syndrome.

Max lived an amazing 5 weeks before he passed away. He constantly amazed medical professionals and his family with his abilities despite having almost no brain. He has forever changed his parents live’s, and has made a big impact on people all over the world.

Caitlin and Dallin: Spinal Muscular Atrophy, or SMA, Type 1

Caitlin and Dallin’s daughter, Auni, was 4 months old when they realized she wasn’t developing typically. When Auni was 7 months old, she was diagnosed with Type 1 Spinal Muscular Atrophy, or SMA, which is a terminal diagnosis. Auni lived 22 months before she passed away. Caitlin and Dallin open up about the emotional journey they have been on, and the gift Auni was to them, and the joy she brought to their lives.

Maria and Brandon: Chromosomal Deletion 9Q

While Maria was pregnant with her son Chase, a prenatal ultrasound revealed a cleft lip and some umbilical cord abnormalities.

After Chase was born, testing revealed he was missing part of a 9th chromosome on the Q branch, known as Chromosomal Deletion 9Q. Chase is the only known person with this condition, in it’s severity, in the whole world.